Saturday, March 20, 2021

Saturday, March 20, 2021

Tonight's picture was taken in March of 2009. Mattie was home between hospital treatments and we were playing together in his bedroom. His bedroom was packed with all sorts of toys, books, and gifts! Nonetheless, Mattie dressed up as a knight. Given all his surgeries, he couldn't walk very far, but that did not stop him from playing and engaging me. You will notice an aero mattress in front of Mattie. This was the mattress I slept on when Mattie was home from the hospital. Mattie was always connected to IVs, and there was no way he could be left unsupervised. Especially since he woke up frequently at night to urinate. So Mattie needed help and support 24 by 7, which was an adjustment for all of us. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 29,772,552
• Number of people who died from the virus: 541,659

We went to Mattie's school today to clean up Mattie's memorial trees and decorate them for his birthday. We removed all the Christmas ornaments and replaced them with spring themed items! 

The theme we chose was butterflies. I found these wonderful copper colored butterflies and they now are fluttering on Mattie's main tree. Mattie has three memorial trees on the campus, because several died over the years. Therefore, we decorate all the trees. 

Since the sun was out and it is a Saturday, there were many families and children on the playground. I always find that this vision makes me angry. As there is happiness all around me, and yet I am decorating a tree for my child who died. It is almost 12 years later and I still haven't found peace with coming to decorate the tree with families and kids playing all around me. I almost want to start shouting that this is solemn ground, so some quiet and respect for this tree would be appreciated. Of course if I did that, I would look like the crazy tree lady. 

We always bring a ladder and grabber with us, as the trees are over our heads now. While on campus, we saw the arborist, Tim. Tim has been caring for Mattie's trees since the beginning. In fact as each tree died, Tim paid for the tree's replacement, not the school. He is a wonderful man, who says he never met Mattie, but feels strongly in helping to keep him memory alive. We need to clone Tim. 

Around the base of Mattie's tree, you can see our crocuses are coming up, along with daffodils and tulips. We planted bulbs a few years ago, and they continue to sprout up every spring. 

This is the third memorial tree planted for Mattie. It is a Yellowwood tree. This tree got hit and almost split in half during a storm several years ago. Yet the tree trunk has now fused together and is stronger than ever. 

The Yellowwood tree is decorated with donut ornaments. In honor of Mattie's love of donuts. While in the hospital, Mattie consumed many donuts. He went through several phases, one being donuts. 

The copper butterflies!

Friday, March 19, 2021

Friday, March 19, 2021

Tonight's picture was taken in March of 2009. That evening we took Mattie to the circus. His art therapist gave us special box seats. We literally had an entire box to ourselves and Mattie got a cat's eye view of the stage. Going to the circus was a new adventure for Mattie. He loved the whole experience, the seats, meeting up with his friend in cancer (Brandon) during intermission, and of course buying some circus gear that lit up and was eye catching. That was our first and last trip to see the circus together. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 29,723,741
• Number of people who died from the virus: 540,950

If I listed everything I did today, I honestly would look manic. Between phone calls, computer work, walking Sunny, running out to our Foundation's mailbox to pick up checks, managing the launch of our new walk website next week and the list goes on! Which is why I am signing off early tonight and hopefully tomorrow will be a more manageable day! 

Thursday, March 18, 2021

Thursday, March 18, 2021

Tonight's picture was taken in March of 2009. That was a very exciting day for the pediatric units. It was the official grand opening of the child life playroom. Sponsored by Toys R Us. Which was why the mascot, Geoffrey the giraffe, was on hand! Mattie took an active role in the ribbon cutting ceremony and met many of the hospital administrators who were in attendance. It was a fun and joyous event, and I can assure you the playroom was desperately needed. Prior to the building of the playroom, the only gathering place to play and move about was the hospital hallways. Of course I remember the huge cake! Sugar was my way of coping through each day during Mattie's cancer journey. You could give Mattie a piece of cake, but I was always the lucky recipient of his desserts. As Mattie really wasn't into sweets. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 29,662,431
• Number of people who died from the virus: 539,215

I received an article in my email today and it caught my attention. It was entitled, Nurses Help Parents of Children With Cancer Feel Listened To, Create Trustworthiness. The reason why it caught my attention is because from our personal experience with Mattie, I learned what a vital role a nurse plays in a hospital. They may not be writing the orders for the types of treatment and medication to be administered, however, they do everything else. Which means they carry out those orders and are by the patient and family's bedside. They get to know the whole person, not just the person doctors see for five minutes to make a quick assessment. As we all know, we are much more than just what our blood work and radiology data reports. 

Throughout Mattie's cancer journey, it was his nurses who shared with insights about side effects, how to manage them, and also in their subtle ways, their kindness and listening ears helped to manage the day to day stresses of living in a pediatric ICU and worrying about Mattie's prognosis. 

The bottom line from this Swedish study is that when parents work with a compassionate nurse, they feel like they understand their child's diagnosis and treatment better, they feel listened to, and most of all trust is formed. When we are talking about cancer treatment on your child, trust in a healthcare provider is tantamount. After all we are turning over our children into their care! But I think trust goes both ways. Nurses can make us feel like trusted members of the health care team, and in turn this allow us to let our guard down and begin trusting them. It is when this mutual trust exists, that improved health outcomes can actually happen. To this day, now almost 12 years later, I still remember Mattie's nurses. These are extraordinary women, who officially cared for Mattie, but in the process cared for Peter and me.

Wednesday, March 17, 2021

Wednesday, March 17, 2021

Tonight's picture was taken on St. Patrick's Day of 2009. That day, Mattie was headed to the outpatient clinic to receive his immunotherapy treatment. Several of Mattie's friends dropped off shamrocks to celebrate the holiday. Despite how Mattie was feeling, he still had the spirit and sense of humor to put on all the clovers. It is still one of my favorite photos from that year and to this day I still have the glasses and headband on display in Mattie's room. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 29,602,515
• Number of people who died from the virus: 537,923

I had every intention of working on Mattie Miracle's March newsletter today. However, just about everything happened to prevent me from working. It started this morning with a call from our bank. We are trying to resolve a fraudulent transaction and literally they had me on the phone for 45 minutes. Until finally the representative and her manager agreed that their computer system was down and they did not want to waste anymore of my time. Well that is until she calls me tomorrow morning to start the process all over again! 

Meanwhile, Indie, our cat, has clearly not been feeling well. She vomited all over our home and tonight pooped in the tub. Which isn't like her. Needless to say, I have done five loads of laundry and scrubbed the tub with clorox. This is only part of my day! 

I am signing off as I still have a migraine that started last week. It isn't lightening up and it is making every task ten times harder. 

Tuesday, March 16, 2021

Tuesday, March 16, 2021 -- Mattie died 598 weeks ago today.

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom with Peter. I unfortunately missed that moment in time. Mattie was surrounded by his nurse and a few other hospital staff. They were having a yoga contest. It turns out that Mattie was quite good at replicating poses that he saw on the TV. Which was ironic when you consider that both arms and one leg had prosthetic bones inside of them. Mattie could no longer walk independently and do many typical activities of daily living like dressing and bathing. Yet he had balance and strength enough to take on this challenge! Truly amazing.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 29,544,991
• Number of people who died from the virus: 536,808

It is hard to believe that other than walking Sunny, I have been working on designing the Foundation's Walk website ALL day. I didn't just start today. I have been at it for a month. The company we use that provides event software, changed their platform this year. So what should have been an easy re-creation of the website, turned into a massive learning endeavor. From branding the site, figuring out how to get our Foundation colors on the site, to developing content and visuals. The trend now with events is that the landing page describes the Foundation and its history. From there the viewer can navigate to our actual walk site with registration. This is the first visual participants will see this year. 

 

This is the registration page. Again, another steep learning curve on how to design this as well as figure out registration options for participants. As the old system was very different from the new system. So how I had individual walkers versus teams register in the past, doesn't work with the new system. 

If all of this wasn't bad enough, the system requires that I develop a separate raffle website. Which I never had to do before. In the past, the walk and raffle were featured on a consolidated site. So though I am not wild about separating them apart, I have to evolve with the technology.

So much about Mattie Miracle forces me beyond my comfort zone to figure things out! If I want things done, I have to do it. There is no one in the wings going to do this for me. But what running the Foundation has shown me is when focused and determined, a lot can get accomplished.  

Monday, March 15, 2021

Monday, March 15, 2021

Tonight's picture was taken in May of 2009. Mattie was attending the "Mattie March." An outdoor event hosted by our support community to show Mattie how much he was loved. That event served as a model for Mattie Miracle's annual awareness walk. Given that I am designing our 2021 walk and raffle website, I am reflecting on many historical photos.  

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 29,489,181
• Number of people who died from the virus: 535,560

I started my day with a six month follow up at my ophthalmologist's office. My eye doctor retired. In fact, my September 2020 appointment was on his last day of practice. He may have practiced for 44 years, but he and I were not a good match for each other. In my last appointment with him, I felt he was rushing, did not want to answer my questions, and refused to send a copy of my exam report to my internist. So I literally asked for him to give it to me on the spot. The report mentioned that I had cataracts in both eyes and that I was a glaucoma suspect! Neither of which were EVER mentioned to me in person. I found out by reading the report. THANKFULLY I asked for the report, otherwise how would I know?! The report also said I was given "counseling" before I left the office about the condition. NOPE!

So today's follow up was to look at my eye pressure and my "narrow angles." The angle is the space between the clear part of the eye (cornea) and the colored part (iris), close to their meeting point near the edge of the iris. It contains the trabecular meshwork, which is the main structure that directs fluid out of the eye. 

In closed angle glaucoma, the angle is closed in many or most areas, causing increased eye pressure, which leads to optic nerve damage, and possible vision loss. This rise in eye pressure may occur suddenly (an acute attack of angle closure) or gradually. There are also precursor forms of the disease in which the angle is closed but the eye pressure is not high and the optic nerve is not affected yet.

Before I let any of the techs put drops in my eyes today, I demanded to meet the new doctor. I wanted to go over the report from September's visit. I made it clear that I was unhappy with my September visit and I wanted answers. Unfortunately the new doctor was defensive and said things like:

1. All patients like Dr. so and so! Only one in 1,000 have issues with him. 
2. What do you want a doctor who is busy and sees lots of patients or one who can sit around and talk with you at length?
3. He probably did not want to tell you about cataracts and that you are a glaucoma suspect because then you would be worried about it and think that you definitely have these conditions. 
4. Your headaches are probably caused from having narrow angles. 

I am giving you the top 4 comments. The first comment was patronizing and dismissive. But it is tied with number 2. I think doctors think that talking and relating to patients are going to take time. Time that they don't have. I don't think a doctor has to have a lengthy conversation with a patient to develop rapport. Rapport can actually happen within minutes, but the key is this has to be an important factor valued by the doctor. Not only did my previous doctor think this was unnecessary, I found out today that the whole practice operates under this same delusion. 

However, comment number 3 is ridiculous! Doctors need to tell patients what is going on and to inform them about their own conditions and care. Not telling the patient reminds me of care from the 1950s, and certainly it is a mindset that doesn't compute with me. But to pin my headaches on "narrow angles" is a total stretch. I told her I have been under the care of a neurologist since my 30s. In my 30s I did not have narrow angle issues and yet I have the same headaches now as I did back then. So to say I need an iridotomy (a laser procedure) to address this issue makes me pause. 

When I checked out of the office to pay for today's visit (another affront, as the doctor should have paid me), the person behind the counter started talking to me. Turns out she isn't part of the typical staff. She was dressed undercover, as she is part of the management of this clinic and others in our area. So I gave her a mouthful. She thanked me for my honesty and then also gave me the name of another opthamologist (at a different practice) to consult with, one who values patient centered care. I meet with him in April. Needless to say it was a horrible visit today, which set me off for the rest of the day. 

Sunday, March 14, 2021

Sunday, March 14, 2021

Tonight's picture was taken in March of 2005. This was not an unusual sighting in our home. Yes we had rolls of painters tape available! Mattie loved tape and used it for all sorts of things. Creating streets and tracks on our floors was one of its uses! Naturally you need these lines when creating intricate play schemes with cars, trains, and other vehicles! After Mattie died, I can still remember how empty our home felt. It took a very very long time to accept that quiet change, but his presence and the life he brought to every situation will always be missed. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 29,432,952
• Number of people who died from the virus: 534,810

I have been on a tear this weekend! Yesterday I wrote to the Mayor's office about encampments and today I went around snapping photos of graffiti in my neighborhood. I have reported this twice before and I am hoping three times is a charm. In fact, some areas in the city get hit with graffiti often, so why not have a crew circulate around the city to address this? Why must residents be the ones to report these hot spots? I see our neighboring cities being pro-active with graffiti, why not DC?

Isn't this hateful? This walk sits right in from of the US Department of State. I think it is criminal and truly offensive. I reported this months ago, but to no avail, the graffiti remains!

Meanwhile, I have had several frustrating email conversations with the Mayor's office. I understand they are complying with the CDC guidelines, which states that encampments should not be moved during the pandemic. Nonetheless, as I stated, I feel like tax paying residents have little to no power on maintaining and improving the safety and health within their neighborhoods. This issue, along with graffiti, are hot buttons for me. I also believe that supplying tents, brooms, gloves, and other items to the homeless are bandaids. This is not a long term or viable solution to help people get off the streets, to have access to mental health services that are needed, and to become productive members of our society. Something needs to change and though my letters will accomplish nothing, I still feel passionate to write them. 

On a happier note, daffodils are blooming in Mattie's memorial garden! 

This to me is the official start to spring. Seeing these yellow happy flowers means warmer weather is on its way.